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MS Pain, No Gain

For a long time, pain wasn’t officially recognized as an MS symptom. In fact, some of our community members still note that their providers don’t consider their pain to be related to their MS! But it can be one of the most debilitating MS symptoms, and it can come in many different forms. Burning, neuropathic pain, electric pins and needles sensations, or sharp, shooting pains are all experiences reported by our community here at MultipleSclerosis.net. Many of our contributors have also written articles over the years describing their experiences with MS pain and how difficult it can be to describe to others. We wanted to provide a few articles here for you to share next time you hear, “MS doesn’t cause pain.” We beg to disagree!

Explaining MS Pain

Is MS Pain Real?

Ashley describes the pain that comes from spasticity, the MS hug, and dysthesias and how sometimes, just being touched is enough to make her want to scream. Read here.

You Know You Have MS When

Our own community shared how pain is one of the first things that came to mind when given the prompt, “You know you have MS when _______.” See how people like you describe their MS pain as well as the other signs and symptoms! Read here.

The Psychology of Living With Chronic Pain

Pain doesn’t just affect the physical body. The psychological effect of constantly being in pain isn’t something that everyone understands. Stephanie dives into the the impact of chronic pain on mental health and some effective coping mechanisms. Read here.

How Are You?

The question “how are you?” is usually quite loaded for those with MS when they are almost always physically in pain or experiencing other awful symptoms. Most people don’t seem to really want to know the true answer to that question, so people with MS often answer “I’m fine,” even when they’re not. Marc wrote an article to address his response to the common question. Read here.

MS… What’s It Like?

Some friends and family might ask what MS is really like in order to try to better understand. Ashley takes a stab at answering that question and describing the nerve pain, fatigue, and cog-fog that characterize her personal experiences. Read here.

Poll

Experiencing pain day in and day out is draining, especially if your doctor doesn’t take it seriously! If you’re ever unhappy with the care you receive, it’s important to seek out second opinions or even see a pain management specialist to address pain as a symptom by itself. Discussing treatment for pain with your healthcare team should always be the first step, but there are other complementary treatments that can help.

Complementary treatments

Sticking Point – MS and Acupuncture

Laura shares her experiences with acupuncture and how it has helped with her MS pain related to muscle spasms and muscle fatigue while also answering questions like “does it hurt?” and “is it covered by insurance?” Read here.

Massage And MS: Managing Symptoms and Improving Quality Of Life

Cathy describes overcoming her preconceived notion that massages were just a luxury for the wealthy and realizing how helpful they can be for stress, pain, and muscle tension. Read here.

Have you found success with any complementary treatments for MS pain? Share your tips and experiences in the comments below to help out others in the community!

Comments

  • dgerbing
    1 year ago

    Maybe i’m wrong but Hydrocodone helps my pain. If i cannot do the things with my family then it is just not worth being around.I just want to enjoy my life and not pay for extra stuff to treat MS. I have tried therapy ect ect. It does not take pain away. Tried chiropractor too. Does anyone agree?

  • Shelby Comito moderator
    1 year ago

    Hi @dgerbing, thank you for your comment. I appreciate you reaching out and sharing what has and hasn’t been working for you. I hope others will chime in and share their experiences with you as well. Thank you again for sharing and being a part of our community. Best, Shelby, MultipleSclerosis.net Team Member

  • SouthSideIrish
    1 year ago

    I have many autoimmune diseases that cause pain so when my doctors ask me where I have pain I touch the tip of my nose and tell them that it doesn’t hurt.When they ask how much pain I’m in from one to ten I assess my over all pain and then any very painful symptoms. I’ve been called delusional, psychotic, schizophrenic or bipolar because most doctors refuse to listen to their patients for more then 1 minute. Then when you get upset for being patronized you labeled nuts.

  • Julie
    1 year ago

    Pain is a visitor I didn’t invite and one that I can’t figure out how to throw out. It aggravates and brings me to tears during the day and doesn’t let me sleep at night. When people ask how I am doing, I’m pretty sure they don’t want to hear this.

  • dgerbing
    1 year ago

    Same here i do not sleep at all at night. I get thru my day with pain pills

  • Blondww
    1 year ago

    Cannabis whole plant products are working for my pain.

  • potter
    1 year ago

    Stabbing pains so bad my leg will start kicking and twitching. I keep frozen water bottles in the freezer and when I get the stabbing pains in my foot I ice my foot with one. I think is just numbs it, but it helps. Potter

  • LuvMyDog
    1 year ago

    I was diagnosed with MS 37 years ago. Part of that diagnosis had to do with the odd pains I would get. I was very fortunate to have met a wonderful neurologist, who at the time was chief of the neurology department. He was incredibly nice, compassionate and kind and was always there to speak to me and offer help if needed. He retired and later passed away. He is someone I will never forget. I’ve never found another doctor like him. As far as constant every day pain goes, no one understands what that’s like unless of course they deal with it. Telling my primary care doctor about pain is useless to say the least, she just doesn’t get it and figures an occasional Tylenol or Advil should suffice. In my area there are very few doctors if any who are truly knowledgeable about MS. I used to travel 94 miles to see my doctor and when he retired, he recommended another who was 86 miles away. I then found one that was 55 miles away but stopped going there too. Long drives are no longer something I can do. Some days are better than others but I very rarely get much done in a day anymore, MS and pain rule my life.

  • Hana139
    1 year ago

    Yes I can say it with no doubt, 80% of my symptoms is pain whether headaches (all types), burning feeling, neuropathic pain, spasm related pain, optic nerve pain, and general pain due to fatigue.

  • New to me
    1 year ago

    Saying MS does not cause pain is one of the most absurd statements I have ever heard, I so wish someone would invent a “pain meter” it would eliminate “seekers” and foolish statements like this one, winter by far causes the most muscle and spasm pain, don’t get me wrong summer heat causes it fair share of anguish but the cold gets me impart because we have 8 months of it some years… saying MS does not cause pain tells me Drs still have no clue!

  • LuvMyDog
    1 year ago

    You are so right! I’ve heard that from doctors too and I’d like to slap them in the head to wake them up but it wouldn’t do any good.
    I wish people would realize that doctors are NOT gods. They are imperfect human beings and DO make mistakes. Unfortunately, when they make mistakes, it’s the patient who suffers.

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